I realize I have been absent from my blog for some time now. I didn’t realize how long until today. Hopefully I will be more faithful at posting. Again.
My attention these past few months have solely been on finding a means of transporting my electric wheelchair. As I wrote in “I’m Back,” I had an online fundraiser that was successful and promptly purchased a Bruno Chariot to transport my wheelchair behind my car. Two months later, I began having problems. Apparently the snake oil salesmen that sold it to me, did so knowing the trailer was not rated for my car. Because it wasn’t rated for my car, the trailer broke two hitches.
For over two months I struggled to get a refund, and finally received it in full. I then sold that car and hunted for a new means of transporting myself and my wheel chair. After much stress, prayer and investigation, I decided to buy a wheelchair van. After finding a used van in my price range, that is what I purchased. So once again, I am able to get about on my own.
It’s easy to take for granted the simple things in life. Like being able to go to the grocery store by yourself and not have to have somebody go with you so they can push you around in a wheelchair. Independence is such an important thing to have. Until you loose a measure of it, you don’t realize how much you cherish it.
Well...having not posted any articles in some time, I have had time to think about several topics I wish to write about. By not writing for almost three months, I feel as though I have let my followers down. I apologize to you for my negligence, and will do my best to be more faithful in the future.
Sincerely,
Your friend,
Jon
Monday, October 13, 2014
Thursday, July 3, 2014
Should I Have Children with Sickle Cell?
I recently responded to a post on the Sickle Cell Warrior’s facebook page. A young woman who was dating a young man learned that they both are carriers of Sickle Cell and if they marry, there is a chance that their children will be born with SCD. This person wondered if she and her love interest should dissolve their wedding plans and never risk bringing a child with SCD into the world.
I was surprised that many people responded by saying, “Yes. Break up. No parents should ever bring a child into this world knowing it may be born with Sickle Cell Disease.” We are all entitled to our opinion, and I won’t tell anyone they are wrong for feeling that way. But I strongly feel differently about the subject.
There are no guarantees. There are many illnesses far worse than Sickle Cell. In pregnancy and childbirth there are many dangers that can leave a child damaged, injured, and physically and or mentally impaired for the rest of their life. Not being a carrier of a genetic illness doesn’t guarantee you a healthy child.
I, like my younger sister Kimi, am adopted. Kimi was put up for adoption because, unlike her other biological siblings, Kimi was not born “perfect.” She was born with portions of her brain missing; she couldn’t, walk, talk, see or do anything for herself. But during the twenty years she lived on this earth, Kimi impacted many other lives. Much of the spirituality I have, I attribute to Kimi being a part of my life.
One of my favorite stories during Christ’s ministry is found in John 9:1-3. It reads: “And as Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.”
What I’m about to say, I say not out of pride, but to glorify God. I have made a profound difference in the lives of many people. This has happened because of my illness. Those who are a part of my life have seen the many miracles that have surrounded it. People see the positive and spiritual manner in which I choose to live my life in spite of my pain and tribulations. Consequently, they are made better by it. This is a gift and a responsibility our Heavenly Father has given me. I am not alone in this. Many people with all sorts of mental and/or physical challenges touch the lives of those around them in very special ways.
Too often our society puts too much emphasis on glorying the perfection of the human form above glorifying the perfection of God’s love. There are many out there who feel that quality of life is defined by how physically and/or mentally fit a person is. All life has value and quality; regardless of how physically or mentally capable they are.
Yes, living with Sickle Cell is a difficult challenge. Yes, like others with my illness, I live with a lot of pain and discomfort; but it’s a life I’m happy to have. I’ve been blessed with an amazing family, good friends, and a faith in God that sustains me. If I had the choice to live the life I have or not be born at all, I would choose this life.
To anyone thinking of not bearing children simply because it might be born differently than most of the population, I beg you to reconsider. With every adversity come blessings in greater proportion. If a child is born different, a beauty will surround that life that would otherwise not be present. My sister Kimi, for example, could do nothing for herself. The consequence of that was, Kimi did so much to bless the lives of everyone in my family, and everyone that knew her. The same is true for those living with chronic illness; that is, through them, the works of God are made manifest.
I was surprised that many people responded by saying, “Yes. Break up. No parents should ever bring a child into this world knowing it may be born with Sickle Cell Disease.” We are all entitled to our opinion, and I won’t tell anyone they are wrong for feeling that way. But I strongly feel differently about the subject.
There are no guarantees. There are many illnesses far worse than Sickle Cell. In pregnancy and childbirth there are many dangers that can leave a child damaged, injured, and physically and or mentally impaired for the rest of their life. Not being a carrier of a genetic illness doesn’t guarantee you a healthy child.
I, like my younger sister Kimi, am adopted. Kimi was put up for adoption because, unlike her other biological siblings, Kimi was not born “perfect.” She was born with portions of her brain missing; she couldn’t, walk, talk, see or do anything for herself. But during the twenty years she lived on this earth, Kimi impacted many other lives. Much of the spirituality I have, I attribute to Kimi being a part of my life.
One of my favorite stories during Christ’s ministry is found in John 9:1-3. It reads: “And as Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.”
What I’m about to say, I say not out of pride, but to glorify God. I have made a profound difference in the lives of many people. This has happened because of my illness. Those who are a part of my life have seen the many miracles that have surrounded it. People see the positive and spiritual manner in which I choose to live my life in spite of my pain and tribulations. Consequently, they are made better by it. This is a gift and a responsibility our Heavenly Father has given me. I am not alone in this. Many people with all sorts of mental and/or physical challenges touch the lives of those around them in very special ways.
Too often our society puts too much emphasis on glorying the perfection of the human form above glorifying the perfection of God’s love. There are many out there who feel that quality of life is defined by how physically and/or mentally fit a person is. All life has value and quality; regardless of how physically or mentally capable they are.
Yes, living with Sickle Cell is a difficult challenge. Yes, like others with my illness, I live with a lot of pain and discomfort; but it’s a life I’m happy to have. I’ve been blessed with an amazing family, good friends, and a faith in God that sustains me. If I had the choice to live the life I have or not be born at all, I would choose this life.
To anyone thinking of not bearing children simply because it might be born differently than most of the population, I beg you to reconsider. With every adversity come blessings in greater proportion. If a child is born different, a beauty will surround that life that would otherwise not be present. My sister Kimi, for example, could do nothing for herself. The consequence of that was, Kimi did so much to bless the lives of everyone in my family, and everyone that knew her. The same is true for those living with chronic illness; that is, through them, the works of God are made manifest.
Monday, June 9, 2014
I'm Back!
To my few faithful followers, I apologize for neglecting my blog these past few months. I am back and will be a faithful blogger again.
As I have commented before, I am now wheelchair bound due to AVN of the hips. About four months ago I received an electric wheelchair through my insurance. I then needed a way to transport it to my doctor’s appointments. At the suggestion of a family member, I held an online fundraiser. In two months time I raised the $5000 I needed.
Receiving donations from so many friends, family and strangers in such a short period of time was a massive morale booster. It was amazing to receive the outpour of support from so many people. Regradless if I received a $5 donation, or my most generous amount of $650, I was grateful for every dollar. I know people gave what they could; and for some people, $5 was all they had to give.
I now have a means to transport my wheelchair and have been able to take it to the places I need to. For the first time in over a year, I was able to go to the grocery store by myself. I bought my dear mother flowers, just because I could.
I was so weighed down with remorse about being confined to a wheelchair. The hardest part was the loss of independence. I had to depend on someone going with me everywhere I went to push me in a mobility chair that was donated to me. It was a helpless and degrading feeling. I hated having to have people push me around in a wheelchair. Now that I can take my power-chair to the places I want and need to go, I have my independence back again. It has boosted my spirits so much.
When I first found out I could not have my hip replacement surgery and would be confined to a wheelchair, I was devastated to say the least. It was something I never prepared myself for. Only now am I beginning to feel as though I’m making peace with my new reality. And the generosity of so many people helped to make that happen.
I think my point in sharing this on my blog is this: Speaking personally, I at times struggle to have faith in people. Friendship is something I sometimes have troubles believing in. The help I received from so many people to get the things I needed to transport my chair...it not only helped my morale in regards to being in a wheelchair, but it helped me believe in people. In my time of need, my true friends gave of their means. And that means a lot to me.
The things we endure as Sickle Cell patients, it profoundly impacts our relationships with other people. Sometimes its hard to keep faith in them; or such is my experience. As I have said many times in other posts, we have a choice in how we allow our illness to impact our life. We choose how it impacts our relationships. We choose what kind of man or woman we are going to be in spite of our afflictions. Like the knight said near the end of Indiana Jones and the Last Crusade said, “Choose wisely.”
As I have commented before, I am now wheelchair bound due to AVN of the hips. About four months ago I received an electric wheelchair through my insurance. I then needed a way to transport it to my doctor’s appointments. At the suggestion of a family member, I held an online fundraiser. In two months time I raised the $5000 I needed.
Receiving donations from so many friends, family and strangers in such a short period of time was a massive morale booster. It was amazing to receive the outpour of support from so many people. Regradless if I received a $5 donation, or my most generous amount of $650, I was grateful for every dollar. I know people gave what they could; and for some people, $5 was all they had to give.
I now have a means to transport my wheelchair and have been able to take it to the places I need to. For the first time in over a year, I was able to go to the grocery store by myself. I bought my dear mother flowers, just because I could.
I was so weighed down with remorse about being confined to a wheelchair. The hardest part was the loss of independence. I had to depend on someone going with me everywhere I went to push me in a mobility chair that was donated to me. It was a helpless and degrading feeling. I hated having to have people push me around in a wheelchair. Now that I can take my power-chair to the places I want and need to go, I have my independence back again. It has boosted my spirits so much.
When I first found out I could not have my hip replacement surgery and would be confined to a wheelchair, I was devastated to say the least. It was something I never prepared myself for. Only now am I beginning to feel as though I’m making peace with my new reality. And the generosity of so many people helped to make that happen.
I think my point in sharing this on my blog is this: Speaking personally, I at times struggle to have faith in people. Friendship is something I sometimes have troubles believing in. The help I received from so many people to get the things I needed to transport my chair...it not only helped my morale in regards to being in a wheelchair, but it helped me believe in people. In my time of need, my true friends gave of their means. And that means a lot to me.
The things we endure as Sickle Cell patients, it profoundly impacts our relationships with other people. Sometimes its hard to keep faith in them; or such is my experience. As I have said many times in other posts, we have a choice in how we allow our illness to impact our life. We choose how it impacts our relationships. We choose what kind of man or woman we are going to be in spite of our afflictions. Like the knight said near the end of Indiana Jones and the Last Crusade said, “Choose wisely.”
Tuesday, April 15, 2014
SCD & Pain Meds #3: Good Judgment
Some time ago, I read a post on the Sickle Cell Warriors facebook page that has haunted me a little. A young man, I believe he was in his twenties, said that his father, with whom he lived, had a rule; if anybody was using methadone for pain management, they were not allowed to drive. When I read that, it saddened me that this man’s father didn’t trust his son’s judgment.
For home pain management, I believe I was first prescribed Tylenol with codeine around the age of fourteen. By the time I was that age, I had proven to my parents that I only used that medication when needed and I never used more than prescribed. When I began driving at the age of seventeen, I always timed out where I would be when the pain medication I was about to take, would kicked it. Back then, my pain medications made me very drowsy, and I always took the necessary actions to ensure I would not be driving when that happened.
Over the years, the prescribed pain medications I take have changed; but that same judgment has not. I’m grateful that my parents trained me to have and use this good judgment. Long before I began driving, it was drilled into me that driving while under the influence of pain medication is just as dangerous and illegal as driving drunk or high from “recreational” drugs.
For the past ten plus years, I’ve been using methadone and moraphine for my home pain management. Because I’ve used these medications as long as I have, very seldom do they make me drowsy or impair me so as to make driving unsafe. Though they seldom make me drowsy, there certainly are times when they do; and when they do, I don’t drive. Sometimes this means not going somewhere; sometimes it means waiting to take my medication; sometimes it means asking someone else to drive.
I express these things to you not to toot my own horn about my Yoda-like wisdom. My purpose is to illustrate to parents and patients...just because you are taking prescription pain killers, doesn’t necessarily mean you can’t be trusted to drive.
Good judgment is key to so much in life. When to drive and not drive when taking prescription pain killers demands good judgment. Help your child learn this life skill. As a parent, you have to start early in training your child on how to use these medications responsibly. As a patient, we have to acknowledge the dangers in using these medications, and always act accordingly. Prove yourself worthy of the trust your parents and doctors are putting in you. As you do, no one will ever have just cause to question your integrity.
![]()
For home pain management, I believe I was first prescribed Tylenol with codeine around the age of fourteen. By the time I was that age, I had proven to my parents that I only used that medication when needed and I never used more than prescribed. When I began driving at the age of seventeen, I always timed out where I would be when the pain medication I was about to take, would kicked it. Back then, my pain medications made me very drowsy, and I always took the necessary actions to ensure I would not be driving when that happened.
Over the years, the prescribed pain medications I take have changed; but that same judgment has not. I’m grateful that my parents trained me to have and use this good judgment. Long before I began driving, it was drilled into me that driving while under the influence of pain medication is just as dangerous and illegal as driving drunk or high from “recreational” drugs.
For the past ten plus years, I’ve been using methadone and moraphine for my home pain management. Because I’ve used these medications as long as I have, very seldom do they make me drowsy or impair me so as to make driving unsafe. Though they seldom make me drowsy, there certainly are times when they do; and when they do, I don’t drive. Sometimes this means not going somewhere; sometimes it means waiting to take my medication; sometimes it means asking someone else to drive.
I express these things to you not to toot my own horn about my Yoda-like wisdom. My purpose is to illustrate to parents and patients...just because you are taking prescription pain killers, doesn’t necessarily mean you can’t be trusted to drive.
Good judgment is key to so much in life. When to drive and not drive when taking prescription pain killers demands good judgment. Help your child learn this life skill. As a parent, you have to start early in training your child on how to use these medications responsibly. As a patient, we have to acknowledge the dangers in using these medications, and always act accordingly. Prove yourself worthy of the trust your parents and doctors are putting in you. As you do, no one will ever have just cause to question your integrity.
Friday, April 4, 2014
Avoiding Hospitalization from Sickle Cell Pain Crisis
For my few faithful followers, I apologize that I’ve been sporadic in posting lately. For the past two weeks I’ve been really sick. Thankfully, through God’s grace, I managed to stay out of the hospital.
Recently, a doctor asked me how I managed my illness so well. The question was prompted by the fact that it’s been two years and ten months since I was last hospitalized; before that it was six years.
Last week I was running a fever, having a severe pain crisis, and fighting the flu. There were moments when I was certain I was going to have to go to the ER. I’ve come to loath the very idea of very hospitalized, so I did all I knew to do, to stay out.
I frequently monitored my temperature and took Tylenol to keep it down. I also kept blankets and as many cloths off of me as possible. To ensure that I didn’t become dehydrated, I made sure I drank half a glass of water every half hour. In addition, I used my oxygen concentrator 24/7 through the worst of it. All these things, and a lot of prayer, worked together to keep out of the ER.
Like I’ve said in other posts, knowing your body is of the utmost importance. Know what you can do at home to take care of yourself, and have the discipline to do it. But know also, when not to wait too long. Once, when I was eighteen, I caught the flu and waited too long to go to the hospital. My hemoglobin dropped down to 2.0. It nearly cost me my life.
This time around, though I did all I knew to do to stay out of the hospital, I was right on the line there for a while. If I had gone another day feeling as poorly as I did for the first three, I probably would’ve had to be hospitalized. Thankfully, I began to improve.
I hope each of you manage your illness to the best of your ability. Until next time.
Recently, a doctor asked me how I managed my illness so well. The question was prompted by the fact that it’s been two years and ten months since I was last hospitalized; before that it was six years.
Last week I was running a fever, having a severe pain crisis, and fighting the flu. There were moments when I was certain I was going to have to go to the ER. I’ve come to loath the very idea of very hospitalized, so I did all I knew to do, to stay out.
I frequently monitored my temperature and took Tylenol to keep it down. I also kept blankets and as many cloths off of me as possible. To ensure that I didn’t become dehydrated, I made sure I drank half a glass of water every half hour. In addition, I used my oxygen concentrator 24/7 through the worst of it. All these things, and a lot of prayer, worked together to keep out of the ER.
Like I’ve said in other posts, knowing your body is of the utmost importance. Know what you can do at home to take care of yourself, and have the discipline to do it. But know also, when not to wait too long. Once, when I was eighteen, I caught the flu and waited too long to go to the hospital. My hemoglobin dropped down to 2.0. It nearly cost me my life.
This time around, though I did all I knew to do to stay out of the hospital, I was right on the line there for a while. If I had gone another day feeling as poorly as I did for the first three, I probably would’ve had to be hospitalized. Thankfully, I began to improve.
I hope each of you manage your illness to the best of your ability. Until next time.
Wednesday, March 12, 2014
Starting a Fundraiser
After jumping through all the required hoops my insurance required, I finally receive the electric wheelchair I'd been hoping to receive. It was delivered on Valentine's day. When I saw it, my heart sank a little. I felt as though a jail-cell door had closed on my life. It has taken a few weeks to emotionally move past feeling that way. Living with Sickle Cell, there are many things I prepared myself for. Spending my life in a wheelchair was not one of them.
Presently, I don't have a way to transport my chair on my car. A wheelchair car carrier is not something my insurance covers. At the suggestion of a family member, I began an online fundraiser. The amount of money that has been raised in a short time has been amazing. The generosity of my friends and family has touched my heart.
The sacrifice of others to help me regain a portion of my independence is helping to remove the shadow of darkness and depression that has clouded my mind. My heart truly has been touched.
Presently, I don't have a way to transport my chair on my car. A wheelchair car carrier is not something my insurance covers. At the suggestion of a family member, I began an online fundraiser. The amount of money that has been raised in a short time has been amazing. The generosity of my friends and family has touched my heart.
The sacrifice of others to help me regain a portion of my independence is helping to remove the shadow of darkness and depression that has clouded my mind. My heart truly has been touched.
Saturday, February 22, 2014
Coconut Oil Helps Sickle Cell Avascular Necrosis
I have a brother who is big into natural remedies and herbal medicine. He's always trying to find things to help me. One of the many things I've tried that have actually helped is cocoonut oil.
Coconut oil can be:
At the sugggestion of my brother, I began putting coconut oil in my morning oatmeal. My purpose in taking it was to help relieve some of the horrendous hip pain I'm always experiencing. Chuck, my brother, told me it would take about two weeks before I noticed a difference.
The avacular necrosis in my hips has put me in a wheelchair. Getting into and out of bed is very difficult. Two weeks after I began taking coconut oil, I noticed a HUGE difference. I was able to get in and out of bed more easily and the pain I daily felt from my hips was greatly reduced. Needless to say, I don't let a day go by without putting a tablespoon full of coconut oil in my oatmeal. My hips causes a lot of discomfort. Coconut oil certainly hasn't removed all of my hip pain, but it has significantly reduced it.
I know there are many Sickle Cell Warriors out there who suffer from avascular necrosis. Maybe coconut oil can help some of you as well.
Stay strong my fellow Warriors. Keep the faith. Stay close to God. Drink plenty of water. Eat well. Sleep well. Stay away from recreational drugs and alcohol. Avoid stress. Choose to be happy.
Until next time my friends.
Coconut oil can be:
- Used in cooking in place of vegtable oil;
- Used on the skin to help with dry skin;
- Used instead of butter on popcorn;
- and many other things I don't know about.
At the sugggestion of my brother, I began putting coconut oil in my morning oatmeal. My purpose in taking it was to help relieve some of the horrendous hip pain I'm always experiencing. Chuck, my brother, told me it would take about two weeks before I noticed a difference.
The avacular necrosis in my hips has put me in a wheelchair. Getting into and out of bed is very difficult. Two weeks after I began taking coconut oil, I noticed a HUGE difference. I was able to get in and out of bed more easily and the pain I daily felt from my hips was greatly reduced. Needless to say, I don't let a day go by without putting a tablespoon full of coconut oil in my oatmeal. My hips causes a lot of discomfort. Coconut oil certainly hasn't removed all of my hip pain, but it has significantly reduced it.
I know there are many Sickle Cell Warriors out there who suffer from avascular necrosis. Maybe coconut oil can help some of you as well.
Stay strong my fellow Warriors. Keep the faith. Stay close to God. Drink plenty of water. Eat well. Sleep well. Stay away from recreational drugs and alcohol. Avoid stress. Choose to be happy.
Until next time my friends.
Monday, February 17, 2014
Oxygen Use and Sickle Cell
Please forgive my failure to write a post in almost three weeks; I’ve been going through a lot emotionally. The post topic for today is the use of oxygen.
About thirteen years ago—I was twenty-seven at the time—I was awaking each morning having a pain crisis. They were mild crises and would dissipate after about thirty minutes to an hour. My doctor ordered a sleep study. It took a number of sleep studies to isolate the issue and find the right fix. I had sleep apnea.
Sleep apnea is a disorder that causes a person to stop breathing one or more times while sleeping. Pauses in breathing can last a few seconds or a few minutes and can happen dozens of times in an hour. The patient will sometimes start breathing again with a loud snort or choking sound. People who are overweight or have large tonsils are often more likely to suffer from this condition. Due to the constant interruption to their sleep patterns, sleep apnea sufferers will feel very tired during the day.
When I was diagnosed with sleep apnea, I was first given a CPAP (continuous positive airway pressure) device. A small mask covers the nose and mouth (affectionately called by my brother, “the Darth Vader mask”). A tube runs from the mask to a small machine. When worn properly, the CPAP machine uses mild pressure to keep the patient’s airway open; this prevents those pauses in breathing.
My brother uses a CPAP device and loves how it has improved his sleeping. For me, however, it did nothing to prevent the pain crises I was having each morning. After another sleep study, it was discovered that my oxygen level dropped to 70% while sleeping. Instead of a CPAP device, I began sleeping with oxygen at night. That corrected the problem.
For the past twelve or thirteen years, I have used an oxygen concentrator while I sleep. When you are in the hospital and wear an O2 mask or nasal cannula, you receive 100% pure oxygen. Using the air in the room, a concentrator removes the nitrogen and delivers 87%-95% oxygen to the user. When last tested, my machine was 98% comparable to 100% pure oxygen; so that’s really good.
Since I began sleeping with oxygen, I seldom wake up in crisis; though it does occasionally still happen. Thankfully, during waking hours, my O2 levels are normal and I don’t need to use oxygen. When I’m having a monsoon level pain crisis, I use oxygen during the day time. I have used it 24hrs a day for two or three days straight when I’m having a bad crisis. When having a severe crisis, I can instantly feel a difference when I put on the oxygen.
I personally feel every Sickle Cell patent needs to have oxygen available to them at home. Using oxygen when I sleep and having it available when in crisis has made a big difference in my life.
¶ Preparing to write this post, I typed “sleep apnea and sickle cell disease” into my search engine. I found numerous informative articles. Emerging data shows that Sickle Cell patients who suffer from sleep apnea are at higher risk for strokes and pain crises. Another article spoke of a 12-year-old patient who suffered from sleep apnea. However, when her tonsils were removed, she showed a dramatic decrease in the number of hospitalizations and pain crises. Having just learned this, I can’t help but wonder how I, as a child and teen, may have benefited from having my tonsils removed.
I think it worthwhile for parents and patients to research this subject and discuss it with their doctors.
About thirteen years ago—I was twenty-seven at the time—I was awaking each morning having a pain crisis. They were mild crises and would dissipate after about thirty minutes to an hour. My doctor ordered a sleep study. It took a number of sleep studies to isolate the issue and find the right fix. I had sleep apnea.
Sleep apnea is a disorder that causes a person to stop breathing one or more times while sleeping. Pauses in breathing can last a few seconds or a few minutes and can happen dozens of times in an hour. The patient will sometimes start breathing again with a loud snort or choking sound. People who are overweight or have large tonsils are often more likely to suffer from this condition. Due to the constant interruption to their sleep patterns, sleep apnea sufferers will feel very tired during the day.
When I was diagnosed with sleep apnea, I was first given a CPAP (continuous positive airway pressure) device. A small mask covers the nose and mouth (affectionately called by my brother, “the Darth Vader mask”). A tube runs from the mask to a small machine. When worn properly, the CPAP machine uses mild pressure to keep the patient’s airway open; this prevents those pauses in breathing.
My brother uses a CPAP device and loves how it has improved his sleeping. For me, however, it did nothing to prevent the pain crises I was having each morning. After another sleep study, it was discovered that my oxygen level dropped to 70% while sleeping. Instead of a CPAP device, I began sleeping with oxygen at night. That corrected the problem.
For the past twelve or thirteen years, I have used an oxygen concentrator while I sleep. When you are in the hospital and wear an O2 mask or nasal cannula, you receive 100% pure oxygen. Using the air in the room, a concentrator removes the nitrogen and delivers 87%-95% oxygen to the user. When last tested, my machine was 98% comparable to 100% pure oxygen; so that’s really good.
Since I began sleeping with oxygen, I seldom wake up in crisis; though it does occasionally still happen. Thankfully, during waking hours, my O2 levels are normal and I don’t need to use oxygen. When I’m having a monsoon level pain crisis, I use oxygen during the day time. I have used it 24hrs a day for two or three days straight when I’m having a bad crisis. When having a severe crisis, I can instantly feel a difference when I put on the oxygen.
I personally feel every Sickle Cell patent needs to have oxygen available to them at home. Using oxygen when I sleep and having it available when in crisis has made a big difference in my life.
¶ Preparing to write this post, I typed “sleep apnea and sickle cell disease” into my search engine. I found numerous informative articles. Emerging data shows that Sickle Cell patients who suffer from sleep apnea are at higher risk for strokes and pain crises. Another article spoke of a 12-year-old patient who suffered from sleep apnea. However, when her tonsils were removed, she showed a dramatic decrease in the number of hospitalizations and pain crises. Having just learned this, I can’t help but wonder how I, as a child and teen, may have benefited from having my tonsils removed.
I think it worthwhile for parents and patients to research this subject and discuss it with their doctors.
Saturday, January 25, 2014
SCD & Pain Meds #2: Tolerance, Dependence, and Addiction
Addiction to prescription pain medication is a serious issue in our country. In fact, more people are addicted to prescription pain medication that all other drugs combined excluding marijuana. As parents and patients, this is something we have to be aware of and fight against. Having said that, we need not allow fear of addiction to deprive those in need of pain relief. The key is to be both informed and disciplined. Part of being informed is understanding the differences between tolerance, dependence and addiction. Misconceptions about what each of these mean are held by medical professionals, patients, and the public in general.
Tolerance
Many people believe that individuals regularly taking pain medication will, over time, need more medicine to get the same relief. Based on the research I’ve done, the truth is this is not likely to happen. Building up a tolerance against the medication’s side affects is more typical.
The four main effects of prescription pain killers are: lessoning of pain, drowsiness, nausea, and constipation. Tolerance against drowsiness and nausea is what generally takes place. Lessening of pain and constipation remain the same for most people. This means constipation and pain reduction are controlled, and there is seldom a need to increase the dosage of the medication. [click here for more info.]
Patients who experience a constant level of pain, can have a consistent level of pain relief from the same dose of medication over a long period of time. The need for higher doses of pain killers is due to worsening of pain rather than building up a tolerance to that medication. [click here for more info.]
I personally have found this to be true. I have pretty much been on the same dosage of pain medication for more than ten years. Most of the time I don’t become drowsy or nauseous from my meds. They do what they are meant to, they reduce my pain. Constipation is an issue but, but it’s controlled with senna, a laxative.
Physical Dependence
If you experience withdrawal symptoms when you stop taking a medication, you have a physical dependence on it. This can occur with recreational drugs, prescription pain killers, anti-depressants and other medications. With continuous use of prescription pain medication, physical dependence is normal and to be expected. Understand, physical dependence is NOT the same as addiction. [click here for more info.]
Symptoms of withdrawal may include agitation, insomnia, diarrhea, sweating, and rapid heart beat. On occasion, I have experienced withdrawal symptoms when I have run out of my pain medication or gone twenty-four hours or more without taking my meds. My body most certainly has developed a dependence on my prescription pain killers. I do not, however, have an addiction to them.
Addiction
Physical dependence and tolerance relate to changes in the physical body. Addiction, however, is behavioral; it’s the use of drugs for non-medical reasons; it means a person is craving drugs not for pain relief but for mood altering effects.
Symptoms of psychological dependence can include:
• Regularly using more of the drug than intended;
• Difficulty cutting down their intake of the drug;
• Becoming anxious about not having access to their substance;
• Loss of interest in activities they once enjoyed;
• Their abuse is interfering with work, family, or social responsibilities;
• Lying or acting secretively;
• Denial of drug use;
• Forgery of prescriptions;
• Theft of drugs from other patients or family members;
• Selling and buying drugs on the street;
• Using prescribed drugs to get high rather than for medical needs.
Pain medication should not be withheld simply for fear of addiction. Patients who use pain medication for authentic medical needs, in truth, are at LOW risk of becoming addicted; it is in fact extremely rare. [click here for more info.]
Tolerance
Many people believe that individuals regularly taking pain medication will, over time, need more medicine to get the same relief. Based on the research I’ve done, the truth is this is not likely to happen. Building up a tolerance against the medication’s side affects is more typical.
The four main effects of prescription pain killers are: lessoning of pain, drowsiness, nausea, and constipation. Tolerance against drowsiness and nausea is what generally takes place. Lessening of pain and constipation remain the same for most people. This means constipation and pain reduction are controlled, and there is seldom a need to increase the dosage of the medication. [click here for more info.]
Patients who experience a constant level of pain, can have a consistent level of pain relief from the same dose of medication over a long period of time. The need for higher doses of pain killers is due to worsening of pain rather than building up a tolerance to that medication. [click here for more info.]
I personally have found this to be true. I have pretty much been on the same dosage of pain medication for more than ten years. Most of the time I don’t become drowsy or nauseous from my meds. They do what they are meant to, they reduce my pain. Constipation is an issue but, but it’s controlled with senna, a laxative.
Physical Dependence
If you experience withdrawal symptoms when you stop taking a medication, you have a physical dependence on it. This can occur with recreational drugs, prescription pain killers, anti-depressants and other medications. With continuous use of prescription pain medication, physical dependence is normal and to be expected. Understand, physical dependence is NOT the same as addiction. [click here for more info.]
Symptoms of withdrawal may include agitation, insomnia, diarrhea, sweating, and rapid heart beat. On occasion, I have experienced withdrawal symptoms when I have run out of my pain medication or gone twenty-four hours or more without taking my meds. My body most certainly has developed a dependence on my prescription pain killers. I do not, however, have an addiction to them.
Addiction
Physical dependence and tolerance relate to changes in the physical body. Addiction, however, is behavioral; it’s the use of drugs for non-medical reasons; it means a person is craving drugs not for pain relief but for mood altering effects.
Symptoms of psychological dependence can include:
• Regularly using more of the drug than intended;
• Difficulty cutting down their intake of the drug;
• Becoming anxious about not having access to their substance;
• Loss of interest in activities they once enjoyed;
• Their abuse is interfering with work, family, or social responsibilities;
• Lying or acting secretively;
• Denial of drug use;
• Forgery of prescriptions;
• Theft of drugs from other patients or family members;
• Selling and buying drugs on the street;
• Using prescribed drugs to get high rather than for medical needs.
Pain medication should not be withheld simply for fear of addiction. Patients who use pain medication for authentic medical needs, in truth, are at LOW risk of becoming addicted; it is in fact extremely rare. [click here for more info.]
SCD & Pain Meds #1: Managing Prescriptions
I recently read a post on the Sickle Cell Warrior facebook page. Since childhood, this person’s mother has always given him his pain medication when he needed it. Though he is now twenty-one years old, he and his mother follow this same pattern. Their main reason in doing this is to prevent addiction.
The problem is, if he’s having a crisis while his mother is at work, he has to wait for her to come home so she can get the medication from her hiding place. Obviously, this is an issue because he has to wait for his mom to get home, thus prolonging and increasing his pain. While I understand taking precautions to prevent addiction, I don’t understand the logic behind this methodology.
One Week’s Worth
Teaching your children to become independent adults responsible for their own health care needs, is vital. Parents, after all, won’t always be there and patients need to learn early on how to manage their own medicine. May I suggest a couple ways you can help your child take charge of this aspect of their health care?
Like many things, baby steps is often the best approach. Rather than just one day handing your adolescent an entire bottle of pain medication, give them a week’s worth of pills, or a few days. This will allow you to monitor how quickly he/she goes through their medication. As they demonstrate to you their responsibility to self-administer, increase the amount you allot them. In time, they will prove to you, and themselves, that they able to handle that part of their health care on their own.
Calendaring
One of the methods I use to monitor my pain medication intake is by calendaring out my medication. Long ago, I purchased a five week long pill container. As you can see from the photo, I have numbered one container for each day of the month. Each container has four slots to separate daily doses of medication.
When I get my pain medication refilled each month, I lay out all thirty-one containers, and put into each slot the proper number of pills I’m allowed to take each day; two pills from one prescription and one from the other.
By calendaring out my medication in this manner I don’t have to worry about: coming up short at the end of the month; going over my prescribed daily allotment of pills; or loosing all of medication.
This method has really helped me. Before I did this, there were times when I ran out of my medication before the month was over. This happened when my pain level was higher that month than the previous one. But since I began using this system, this hasn't been an issue.
The truth is, I don’t always have a need to take all fourteen pills that are prescribed me during a 24hr period. Other times, when a bad crisis has struck me, I have to use a little bit more than what is allotted me. By calendaring out my meds like this, I know when I can take a little more medication without risking coming up short or overdosing.
The problem is, if he’s having a crisis while his mother is at work, he has to wait for her to come home so she can get the medication from her hiding place. Obviously, this is an issue because he has to wait for his mom to get home, thus prolonging and increasing his pain. While I understand taking precautions to prevent addiction, I don’t understand the logic behind this methodology.
One Week’s Worth
Teaching your children to become independent adults responsible for their own health care needs, is vital. Parents, after all, won’t always be there and patients need to learn early on how to manage their own medicine. May I suggest a couple ways you can help your child take charge of this aspect of their health care?
Like many things, baby steps is often the best approach. Rather than just one day handing your adolescent an entire bottle of pain medication, give them a week’s worth of pills, or a few days. This will allow you to monitor how quickly he/she goes through their medication. As they demonstrate to you their responsibility to self-administer, increase the amount you allot them. In time, they will prove to you, and themselves, that they able to handle that part of their health care on their own.
Calendaring
One of the methods I use to monitor my pain medication intake is by calendaring out my medication. Long ago, I purchased a five week long pill container. As you can see from the photo, I have numbered one container for each day of the month. Each container has four slots to separate daily doses of medication.
When I get my pain medication refilled each month, I lay out all thirty-one containers, and put into each slot the proper number of pills I’m allowed to take each day; two pills from one prescription and one from the other.
By calendaring out my medication in this manner I don’t have to worry about: coming up short at the end of the month; going over my prescribed daily allotment of pills; or loosing all of medication.
This method has really helped me. Before I did this, there were times when I ran out of my medication before the month was over. This happened when my pain level was higher that month than the previous one. But since I began using this system, this hasn't been an issue.
The truth is, I don’t always have a need to take all fourteen pills that are prescribed me during a 24hr period. Other times, when a bad crisis has struck me, I have to use a little bit more than what is allotted me. By calendaring out my meds like this, I know when I can take a little more medication without risking coming up short or overdosing.
Sunday, January 12, 2014
Breaking Down a Pain Crisis
Having been in a moderately-severe pain crisis the past several days, I decided to write about how I feel while having a crisis. Hopefully this will provide insight to parents and others seeking awareness.
Mentally Foggy
When I’m in a moderate to severe pain crisis, the combination of the pain and the pain medication causes me to feel...foggy to say the least. It’s extremely difficult to think clearly; or type out a coherent sentence without having to correct a dozen spelling and grammatical errors. No joke; it took me almost a minute to type out that last sentence.
It Hurts to Talk
It not the best conversationalist when in pain. While in crisis I’m using all my focus to regulate my breathing and mentally cope with my pain. Also, it’s physically hard to talk when I’m having a severe pain crisis; I become short of breath very easily. In addition to it being physically difficult to speak with others, I have a hard time properly communicating my thoughts. The pain and medicine clouds everything making it difficult express my thoughts.
It Hurts to Laugh
Like talking, laughing can be very painful when I’m having a moderate to severe pain crisis. The physical exertion of laughing, and the amount of oxygen it uses, just adds hurt to the pain, or salt to the wound as they say.
Need Oxygen
For the past twelve years of my life, I have slept with oxygen at night. Without it, my O2 levels drop to 70% when I sleep. I have an oxygen concentrator. It’s a machine that uses the air in the room to create oxygen equivalent. When last tested, my machine was 98% comparable to pure oxygen. When I’m having a severe enough pain crisis, like right now, I use the oxygen when I’m awake and asleep. Sometimes I will use my concentrator for several days straight. It certainly helps.
Impatient
It’s very difficult to be patient when you’re in pain. In fact, I often don’t realize how impatient I am being with friends or family members when I’m not feeling well. And sometimes I don’t feel well for weeks or months at a time. I imagine being friends with a Sickle Cell patient has it’s own set of challenges; but we are worth it.
Food and Water
It’s hard for me to feel a desire to eat when I’m in a severe pain crisis. Pain can often cause nausea, so I think that has something to do with it. I also have to force myself to drink an appropriate amount of water when in crisis. And of course, this is the time when I most need it.
Don’t Want to Move
Sickle Cell pain isn’t like other kinds of pain; you can’t just work past it. It doesn’t take much to cause a mild pain crisis to transition into a really bad one. Sometimes just moving an arm or standing up makes the pain worse. Often, you can’t and/or don’t want to move in the slightest of ways.
It’s Hard to Read
Reading, writing, and drawing were/are things I can do that put little strain on me. However, there are times when the pain is so bad that it’s impossible to think straight enough to read or write. There have been times when I’ve tried to read a paragraph of something, and it’s taken ten minutes to get through it and understand it. Or times when I’ve tried to write something and I just can’t get it out. Pain alone will do that do you. Pain medication alone will do that to you. When you combine severe pain with increased and potent pain medication...an Einstein you do not become.
Physically Tiring
It’s mentally and physically tiring being in constant pain. It zaps you’re mental and physical strength. Sometimes, the act of lifting a glass of water is difficult and momentarily enhances your pain. As a result, getting up and doing anything is extremely taxing.
Run a Fever
It’s not uncommon for me to run a low grade fever while in crisis. As I mentioned in my “About Me” section, I came to my family straight from the hospital as a foster child. My mother had borne three children of her own before fostering and adopting. As an infant, before I was diagnosed with Sickle Cell Anemia SS, my mother suspected something was not right. Often I would cry as if in pain and run a low grade fever. That symptom of having a fever while in crisis has continued throughout my life.
Spiritually Numb
For me, maintaining my spirituality and feeling God’s presence is the number one most important thing in my life. Sometimes the combined effects of the pain and medication causes me to feel cut off from the spirituality I’m use to feeling. It’s not that I’ve done anything to cause that feeling; it’s just a byproduct of the pain crisis.
Stay Warm
For all Sickle Cell patients, this is always of great importance. It doesn’t take too much time in a cold room or being in the cold outdoors before a crisis can be triggered. Staying warm is extra important when in crisis. I’m even more sensitive to the cold when I’m having sickle cell related pain. In addition to wearing thermal underwear during the winter months, I have an electric blanket--that I’m using right now in fact--to stay warm.
Don’t Touch Me
Sometimes the pain is so severe that the simple act of being touched is agony. When in crisis, I don’t even like to shower; the impact of the water hitting my skin is quite painful. Being patted on the shoulder, having somebody rub my back, or having my cat lay on my lap (like she’s doing right now) can make my pain soar. When in a severe state of pain, I don’t want to be touched by anybody or anything.
Conclusion
Being married to, family of, or friends with a Sickle Cell patient requires a great amount of patience and understanding. There have been, presently are, and always will be days, weeks, months, or even years when I can do very little physically. I have lived with family who were either unwilling or unable to understand that, and it caused conflict. A great amount of conflict in fact; and that put a physical strain on my body that was not healthy for me.
My objective in sharing these insights with you is not to voice my woes. My purpose is to help family and friends of Sickle Cell patients understand what your loved one may be experiencing. Being informed and having insight will help you be more patient with that special person in your life.
Mentally Foggy
When I’m in a moderate to severe pain crisis, the combination of the pain and the pain medication causes me to feel...foggy to say the least. It’s extremely difficult to think clearly; or type out a coherent sentence without having to correct a dozen spelling and grammatical errors. No joke; it took me almost a minute to type out that last sentence.
It Hurts to Talk
It not the best conversationalist when in pain. While in crisis I’m using all my focus to regulate my breathing and mentally cope with my pain. Also, it’s physically hard to talk when I’m having a severe pain crisis; I become short of breath very easily. In addition to it being physically difficult to speak with others, I have a hard time properly communicating my thoughts. The pain and medicine clouds everything making it difficult express my thoughts.
It Hurts to Laugh
Like talking, laughing can be very painful when I’m having a moderate to severe pain crisis. The physical exertion of laughing, and the amount of oxygen it uses, just adds hurt to the pain, or salt to the wound as they say.
Need Oxygen
For the past twelve years of my life, I have slept with oxygen at night. Without it, my O2 levels drop to 70% when I sleep. I have an oxygen concentrator. It’s a machine that uses the air in the room to create oxygen equivalent. When last tested, my machine was 98% comparable to pure oxygen. When I’m having a severe enough pain crisis, like right now, I use the oxygen when I’m awake and asleep. Sometimes I will use my concentrator for several days straight. It certainly helps.
Impatient
It’s very difficult to be patient when you’re in pain. In fact, I often don’t realize how impatient I am being with friends or family members when I’m not feeling well. And sometimes I don’t feel well for weeks or months at a time. I imagine being friends with a Sickle Cell patient has it’s own set of challenges; but we are worth it.
Food and Water
It’s hard for me to feel a desire to eat when I’m in a severe pain crisis. Pain can often cause nausea, so I think that has something to do with it. I also have to force myself to drink an appropriate amount of water when in crisis. And of course, this is the time when I most need it.
Don’t Want to Move
Sickle Cell pain isn’t like other kinds of pain; you can’t just work past it. It doesn’t take much to cause a mild pain crisis to transition into a really bad one. Sometimes just moving an arm or standing up makes the pain worse. Often, you can’t and/or don’t want to move in the slightest of ways.
It’s Hard to Read
Reading, writing, and drawing were/are things I can do that put little strain on me. However, there are times when the pain is so bad that it’s impossible to think straight enough to read or write. There have been times when I’ve tried to read a paragraph of something, and it’s taken ten minutes to get through it and understand it. Or times when I’ve tried to write something and I just can’t get it out. Pain alone will do that do you. Pain medication alone will do that to you. When you combine severe pain with increased and potent pain medication...an Einstein you do not become.
Physically Tiring
It’s mentally and physically tiring being in constant pain. It zaps you’re mental and physical strength. Sometimes, the act of lifting a glass of water is difficult and momentarily enhances your pain. As a result, getting up and doing anything is extremely taxing.
Run a Fever
It’s not uncommon for me to run a low grade fever while in crisis. As I mentioned in my “About Me” section, I came to my family straight from the hospital as a foster child. My mother had borne three children of her own before fostering and adopting. As an infant, before I was diagnosed with Sickle Cell Anemia SS, my mother suspected something was not right. Often I would cry as if in pain and run a low grade fever. That symptom of having a fever while in crisis has continued throughout my life.
Spiritually Numb
For me, maintaining my spirituality and feeling God’s presence is the number one most important thing in my life. Sometimes the combined effects of the pain and medication causes me to feel cut off from the spirituality I’m use to feeling. It’s not that I’ve done anything to cause that feeling; it’s just a byproduct of the pain crisis.
Stay Warm
For all Sickle Cell patients, this is always of great importance. It doesn’t take too much time in a cold room or being in the cold outdoors before a crisis can be triggered. Staying warm is extra important when in crisis. I’m even more sensitive to the cold when I’m having sickle cell related pain. In addition to wearing thermal underwear during the winter months, I have an electric blanket--that I’m using right now in fact--to stay warm.
Don’t Touch Me
Sometimes the pain is so severe that the simple act of being touched is agony. When in crisis, I don’t even like to shower; the impact of the water hitting my skin is quite painful. Being patted on the shoulder, having somebody rub my back, or having my cat lay on my lap (like she’s doing right now) can make my pain soar. When in a severe state of pain, I don’t want to be touched by anybody or anything.
Conclusion
Being married to, family of, or friends with a Sickle Cell patient requires a great amount of patience and understanding. There have been, presently are, and always will be days, weeks, months, or even years when I can do very little physically. I have lived with family who were either unwilling or unable to understand that, and it caused conflict. A great amount of conflict in fact; and that put a physical strain on my body that was not healthy for me.
My objective in sharing these insights with you is not to voice my woes. My purpose is to help family and friends of Sickle Cell patients understand what your loved one may be experiencing. Being informed and having insight will help you be more patient with that special person in your life.
Friday, January 3, 2014
"What Do You Mean by Sickle Cell Pain Crisis?"
Happy New Year to all my readers! I hope 2014 is good to you.
I’ve noticed from conversations with various doctors that the term “pain crisis” means different things to different people. For me, a pain crisis means any kind of Sickle Cell related pain. Sometimes a pain crisis is very faint and mild, other times it’s crippling agony. But some of my doctors think of a pain crisis as something that has caused hospitalization.
In my adulthood, hospitalizations have become more rare than when I was a child and teenager. In the past twenty years, I’ve been admitted less than a dozen times. The first twenty years of my life I was admitted to the hospital over one hundred. June of this year will be three years since my last hospitalization. Pain crises, however, those are very frequent.
People ask what a pain crisis feels like. It’s hard to describe. But the best way I can, is by telling people, “You know when you’ve exercised or used muscles that you haven’t used in a long time, then the next day it hurts to move? The mild to moderate pain crises kind of feel like that. The really bad ones, however, it’s like having a million needles in your back, arms, legs, knees, joints, and all over your skin. It's like they are under your skin; and every time you breath and every time your heart beats, those needles push against your skin and retract.”
Often I compare pain crises to the weather. Sometimes it’s cloudy outside and there’s a light mist of rain. It’s quiet and in the background, but you are aware that it’s present. Then there is the monsoon level of pain crises where the wind is blowing you off your feet; the rain is pouring down so hard you that can’t see a thing; thunder is roaring over head and shaking your house; and lightening is filling the sky. I’ve had the faint dull achy (aka: light mist) kind of pain crisis last as long as a year. I’ve had the monsoon type last many days. You never know.
My point in addressing this has to do with communication. When I see a doctor and they ask when my last pain crisis was, I always ask them “Tell me what you mean by pain crisis.” Usually they mean hospitalization, not Sickle Cell related pain. Proper communication with your doctor’s is of huge importance.
I’ve noticed from conversations with various doctors that the term “pain crisis” means different things to different people. For me, a pain crisis means any kind of Sickle Cell related pain. Sometimes a pain crisis is very faint and mild, other times it’s crippling agony. But some of my doctors think of a pain crisis as something that has caused hospitalization.
In my adulthood, hospitalizations have become more rare than when I was a child and teenager. In the past twenty years, I’ve been admitted less than a dozen times. The first twenty years of my life I was admitted to the hospital over one hundred. June of this year will be three years since my last hospitalization. Pain crises, however, those are very frequent.
People ask what a pain crisis feels like. It’s hard to describe. But the best way I can, is by telling people, “You know when you’ve exercised or used muscles that you haven’t used in a long time, then the next day it hurts to move? The mild to moderate pain crises kind of feel like that. The really bad ones, however, it’s like having a million needles in your back, arms, legs, knees, joints, and all over your skin. It's like they are under your skin; and every time you breath and every time your heart beats, those needles push against your skin and retract.”
Often I compare pain crises to the weather. Sometimes it’s cloudy outside and there’s a light mist of rain. It’s quiet and in the background, but you are aware that it’s present. Then there is the monsoon level of pain crises where the wind is blowing you off your feet; the rain is pouring down so hard you that can’t see a thing; thunder is roaring over head and shaking your house; and lightening is filling the sky. I’ve had the faint dull achy (aka: light mist) kind of pain crisis last as long as a year. I’ve had the monsoon type last many days. You never know.
My point in addressing this has to do with communication. When I see a doctor and they ask when my last pain crisis was, I always ask them “Tell me what you mean by pain crisis.” Usually they mean hospitalization, not Sickle Cell related pain. Proper communication with your doctor’s is of huge importance.
Friday, December 20, 2013
Merry Christmas
I pray my few faithful raers have a Merry Christmas that is full of joy and void of pain.
Sunday, December 15, 2013
Cold Weather and Sickle Cell
It’s impossible for anyone other than Sickle Cell patients to understand how powerfully temperature, and weather, impacts our life. I cannot number the times when I’ve been entirely pain free, and either walked into a cold room or out into cold weather, and instantly had a wave of needling pain wash over my entire body. [And I’m not talking about the kind of pain that comes from your parents needling you about cleaning your room...I mean the pain of a million needles being jabbed into every square inch of your body.]
Then there have been those times when I froze in an air conditioned room for 30-60 minutes; and that short time of temperature discomfort caused a pain crisis that lasted not hours or days, but weeks. Yes, being cold for thirty minutes can cause physical pain that lasts weeks!
Some people say, “Just cover yourself up with a blanket.” But those people are ignorant of the fact that, though I may be moderately warm underneath a blanket or coat, the cold air surrounding me can still trigger horrendous pain. To ward off a cold triggered pain crisis, not only do I personally have to be warm, but the air around me has to also be warm. Obviously, we can’t always control what the temperature around us is set at. So the best we can do is think ahead about where we are going and try to anticipate what the temperature may be like there.
When I go to the doctor, I always dress warm and take a coat, even if it’s 100º outside. The same is true for the movies, church, and anywhere I go where I cannot control the temperature.
At church, some people loving tease me when they see my with my Sunday blanket during the summer. They might say, “Jon, is the air conditioner making you cold or can you just not leave your blanky at home?” Fortunately my church family know what my health issues are and do not judge. But to some degree, taking care of yourself means not caring what people think.
¶ PARENTS: On behalf of your children, please, please, be both tolerate and understanding of how important the temperature is to your child’s health. Also, help your son or daughter learn what she/he must do to stay warm, and teach them how important it is to do so.
Something that might help offset the cost of running the air or heater is something called, a “Medical Baseline Allowance Application.” This is a form you submit to you electric company which provides you with a discount on your electric bill. It can save you some money on the electric bill and is something every Sickle Cell household should get.
This form has to be filled out both by the individual and by your doctor. It basically states, due to medically issues, the temperature in your home has to be within a certain range to stay. The form may also indicate that you have medical equipment that needs to be running, like an oxygen concentrator. The application form can be found on the Southern California Edison website. I’m fairly certain other electric companies off similar savings plans.
¶ PATIENTS: I encourage to have the disciple to always be prepared. If you’re too hot, it’s much easier to take layers of clothing off than it is put layers of clothing on that you don’t have. I think one of the reasons why I was hospitalized so much as a child and teenager was because it took me a long time to learn simple lessons.
Many of my hospitalizations as a kid were the result of getting too cold or too hot. With age and wisdom, I learned to manage my illness better. As a result, I have only been hospitalized nine times in the past 20 years! The twenty years before that, I was admitted one hundred and seven times. That’s a HUGE difference. I work hard at staying out of the hospital, and it has paid off.
¶ So in closing I say:
• Wear thermal underwear; long sleeved shirts; sweaters; coats; jackets; hats; and gloves. No, you don’t have to wear all of these at the same time; unless you live in the Arctic.
• Try not to feel embarrassed about keeping yourself warm.
• Whatever you do, don’t join the Polar Bear Club (you know, those crazy people who jump in rivers of ice just for the fun of it).
Until next time my friends...may warmth be with you.
Then there have been those times when I froze in an air conditioned room for 30-60 minutes; and that short time of temperature discomfort caused a pain crisis that lasted not hours or days, but weeks. Yes, being cold for thirty minutes can cause physical pain that lasts weeks!
Some people say, “Just cover yourself up with a blanket.” But those people are ignorant of the fact that, though I may be moderately warm underneath a blanket or coat, the cold air surrounding me can still trigger horrendous pain. To ward off a cold triggered pain crisis, not only do I personally have to be warm, but the air around me has to also be warm. Obviously, we can’t always control what the temperature around us is set at. So the best we can do is think ahead about where we are going and try to anticipate what the temperature may be like there.
When I go to the doctor, I always dress warm and take a coat, even if it’s 100º outside. The same is true for the movies, church, and anywhere I go where I cannot control the temperature.
At church, some people loving tease me when they see my with my Sunday blanket during the summer. They might say, “Jon, is the air conditioner making you cold or can you just not leave your blanky at home?” Fortunately my church family know what my health issues are and do not judge. But to some degree, taking care of yourself means not caring what people think.
¶ PARENTS: On behalf of your children, please, please, be both tolerate and understanding of how important the temperature is to your child’s health. Also, help your son or daughter learn what she/he must do to stay warm, and teach them how important it is to do so.
Something that might help offset the cost of running the air or heater is something called, a “Medical Baseline Allowance Application.” This is a form you submit to you electric company which provides you with a discount on your electric bill. It can save you some money on the electric bill and is something every Sickle Cell household should get.
This form has to be filled out both by the individual and by your doctor. It basically states, due to medically issues, the temperature in your home has to be within a certain range to stay. The form may also indicate that you have medical equipment that needs to be running, like an oxygen concentrator. The application form can be found on the Southern California Edison website. I’m fairly certain other electric companies off similar savings plans.
¶ PATIENTS: I encourage to have the disciple to always be prepared. If you’re too hot, it’s much easier to take layers of clothing off than it is put layers of clothing on that you don’t have. I think one of the reasons why I was hospitalized so much as a child and teenager was because it took me a long time to learn simple lessons.
Many of my hospitalizations as a kid were the result of getting too cold or too hot. With age and wisdom, I learned to manage my illness better. As a result, I have only been hospitalized nine times in the past 20 years! The twenty years before that, I was admitted one hundred and seven times. That’s a HUGE difference. I work hard at staying out of the hospital, and it has paid off.
¶ So in closing I say:
• Wear thermal underwear; long sleeved shirts; sweaters; coats; jackets; hats; and gloves. No, you don’t have to wear all of these at the same time; unless you live in the Arctic.
• Try not to feel embarrassed about keeping yourself warm.
• Whatever you do, don’t join the Polar Bear Club (you know, those crazy people who jump in rivers of ice just for the fun of it).
Until next time my friends...may warmth be with you.
Friday, December 6, 2013
Procrit and Sickle Cell
This week I wanted to talk about a medication that has REALLY made a difference in my life. Procrit (aka: Epoetin Alfa or Epogen) is a subcutaneous injection that I give myself three times a week.
I’ve been on Procrit for about five years now. For about a year or two prior to taking Procrit, my hemoglobin level hovered between 5.0 and 5.6. Needless to say, I was experiencing a high number of pain crises and a lot of fatigue. It really restricted my social activities.
Finally my hematologist suggested I try Procrit. Generally it’s given to patients who have cancer or issues with their kidneys Procrit stimulates your bone marrow to make more red blood cells. Obviously, more red blood cells means a higher hemoglobin level.
I don’t exactly recall how long it took, but it seems like within a few weeks my hemoglobin had gone from the five to eight. Obviously, I was physically feeling a whole lot better. I was having fewer crises and my stamina improved. Still today, thanks to Procrit, my hemoglobin ranges from 8.6 to 9.2.
Though Procrit has improved my health, there have been battles with the insurance companies. After a couple months, the insurance didn’t want to pay for it any more. Later I learned they had a good reason for that. A month supply cost around $1,000. Crazy, I know. My insurance said two things about Procrit: 1) That the medication had not raised my hemoglobin enough to keep paying for it; 2) Because no studies existed about how Procrit benefits Sickle Cell Disease, they would not pay for it.
I was beside myself with anger. On paper, the difference between 5.2 and 8.6 doesn’t seem like a lot, but it sure made a difference in how I felt.
To get around the insurance company’s red tape, my hematologist suggested that I go see my nephrologist (my kidney doctor). He hoped that since I do in fact have problems with my kidneys, that the insurance company might be more apt to pay for the prescription if it came from a kidney doctor.
So I played the “Out Whit the Insurance Company” game, and went and saw my kidney doctor. Sure enough, because of my kidney issues, and because my nephrologist wrote the prescription, I didn’t have any additional problems getting Procrit. In truth, my kidneys are doing pretty well—especially when I’m drinking the amount of water I should. The main reason I routinely see my nephrologist is so I can get Procrit paid for.
You might ask, “Since Procrit helps increase a patient’s red blood cell count, why aren’t there any studies done about how it helps Sickle Cell Anemia?” The answer is simple; “I don’t know.” That was five years ago. Hopefully there have been studies done since then.
As I’ve said many times before, “the only thing predictable about Sickle Cell is that it’s unpredictable.” Nearly three years ago, even though I was taking Procrit, my hemoglobin dropped to four. Eventually I had to be admitted and get a blood transfusion. Once I received a transfusion, my hemoglobin stabilized. So, even though Procrit has helped improve my red blood cell count, things are still going to happen.
Clearly, my purpose in writing about this is to help my readers. Ask your doctors about Procrit. Perhaps, in addition to doing all thing right things to take care of your self, Procrit can improve your health as it has mine.
Until next time...
I’ve been on Procrit for about five years now. For about a year or two prior to taking Procrit, my hemoglobin level hovered between 5.0 and 5.6. Needless to say, I was experiencing a high number of pain crises and a lot of fatigue. It really restricted my social activities.
Finally my hematologist suggested I try Procrit. Generally it’s given to patients who have cancer or issues with their kidneys Procrit stimulates your bone marrow to make more red blood cells. Obviously, more red blood cells means a higher hemoglobin level.
I don’t exactly recall how long it took, but it seems like within a few weeks my hemoglobin had gone from the five to eight. Obviously, I was physically feeling a whole lot better. I was having fewer crises and my stamina improved. Still today, thanks to Procrit, my hemoglobin ranges from 8.6 to 9.2.
Though Procrit has improved my health, there have been battles with the insurance companies. After a couple months, the insurance didn’t want to pay for it any more. Later I learned they had a good reason for that. A month supply cost around $1,000. Crazy, I know. My insurance said two things about Procrit: 1) That the medication had not raised my hemoglobin enough to keep paying for it; 2) Because no studies existed about how Procrit benefits Sickle Cell Disease, they would not pay for it.
I was beside myself with anger. On paper, the difference between 5.2 and 8.6 doesn’t seem like a lot, but it sure made a difference in how I felt.
To get around the insurance company’s red tape, my hematologist suggested that I go see my nephrologist (my kidney doctor). He hoped that since I do in fact have problems with my kidneys, that the insurance company might be more apt to pay for the prescription if it came from a kidney doctor.
So I played the “Out Whit the Insurance Company” game, and went and saw my kidney doctor. Sure enough, because of my kidney issues, and because my nephrologist wrote the prescription, I didn’t have any additional problems getting Procrit. In truth, my kidneys are doing pretty well—especially when I’m drinking the amount of water I should. The main reason I routinely see my nephrologist is so I can get Procrit paid for.
You might ask, “Since Procrit helps increase a patient’s red blood cell count, why aren’t there any studies done about how it helps Sickle Cell Anemia?” The answer is simple; “I don’t know.” That was five years ago. Hopefully there have been studies done since then.
As I’ve said many times before, “the only thing predictable about Sickle Cell is that it’s unpredictable.” Nearly three years ago, even though I was taking Procrit, my hemoglobin dropped to four. Eventually I had to be admitted and get a blood transfusion. Once I received a transfusion, my hemoglobin stabilized. So, even though Procrit has helped improve my red blood cell count, things are still going to happen.
Clearly, my purpose in writing about this is to help my readers. Ask your doctors about Procrit. Perhaps, in addition to doing all thing right things to take care of your self, Procrit can improve your health as it has mine.
Until next time...
Saturday, November 23, 2013
Suicide & Sickle Cell - To Parents
With the Lord’s help, I try to choose topics that could be most beneficial to anyone who happens on my humble site. For some reason, for the past two weeks, suicide as it relates to Sickle Cell patients, has been on my mind. Forgive the seriousness of my chosen subject matter, but I feel it needs to be discussed.
I am a person who wholly knows what it’s like to feel hopeless and want more than anything in life for his to end. In Section 10) Depression, Antidepressants and Counseling, I share some of my experiences with depression. Having experienced what I have with depression and suicidal thoughts, I feel I can offer some insights for anyone who may be contemplating taking their life; and for those who are concerned that their loved one may be close to doing so.
This illness causes the afflicted to experience so much. Sometimes we feel like we are going to drown in anger and frustration. With all the missed school; lost social time; absent relationships; and chronic pain...sometimes we feel as though we can’t allow ourselves to get close to others. Other times we feel like people don’t want to get close to us. Sometimes the physical pain seems unending and too intense to endure. At times it’s impossible to imagine how things could ever get better. The things we emotionally and physically cope with cause the waters of our soul to run deep, and much is swimming beneath the surface.
The words we speak are often a reflection of the frustration we feel. Frequently, those frustrated words can be perceived by others as dark. I know I’m guilty of that on occasion. A person may ask, “Is there anything I can do?”
Jokingly I have said, “Do you have a gun?”
Not many people understand or appreciate the darker tinges of my humor that can eek out. Frustrated and tired, it’s easy to say such things. It doesn’t mean we are going to act on them; it doesn’t mean we are suicidal; it doesn’t mean we need a padded cell. It may simply mean we’re tired.
So, if the occasional random expressions of a desire for death are not warning signs, what are?
• Frequently talking about dying or taking their own life;
• Expressing feelings of hopelessness;
• Reckless behavior;
• Withdrawing from others;
• Sleeping too little or too much;
• Extreme mood swings;
• A preoccupation with death.
This is a short list. There are many additional warning signs. By no means am I medical professional. A doctor or psychologist will be able to offer additional and more detailed information than I.
Personally, I experienced each one of those warning signs at some point during my struggles with depression. Though I may have experienced several at a time, I don’t believe I experienced all of them at once. So, what should you do if your child or loved one begins exhibiting a multitude of warning signs?
First, learn to distinguish the difference between an expression of momentary frustration and a true state of depression. If you can’t tell the difference, seek advice from medical professionals. Try to encourage your loved one to talk to someone about what they are feeling.
For me, talking to my parents wouldn’t have made any difference. Don’t misunderstand, I have a WONDERFUL family and incredible parents. Too often, however, children discount parental wisdom or insight. I know I did with many things. What finally allowed me to see that I needed help were several conversations with a trusted friend.
This friend was a leader in my church, but more significantly, he lived with diabetes. To a great extent, he understood what it was that I felt. In time, he helped me see: 1) there was no shame in admitting that I needed help; and 2) embrace the possibility that Sickle Cell could effect my mind just as much as my body (please click here for greater details). My point in sharing this is, sometimes parents aren’t the best source for help (mostly because we kids don't want to listen). Sometimes it’s friends, doctors, psychologists, teachers, or church leaders who have the words that carry more weight.
Suicide in young adults is a problem in our country. 4,600 people from ages 10-24 take their own life each year. 157,000 are annually treated for self-inflicted wounds. Parents and loved ones need to be aware of what is going on in the life of those they love and how those things are emotionally impacting their children.
I write this to parents not to frighten you, but to help you understand what may be taking place in your child's mind. I hid, or at least tried to hide, much of my depression from parents. I didn't want them to worry. Perhaps I was afraid of what they might think.
In the post "Family Openness" I talked about how important it is for families to not be afraid to speak openly about life and death and everything in between. For me, thoughts about death and dying have always been present, even at a very young age. It's important to speak with your child about these things and find out what's going on inside them.
I hope this post provided some useful insight for parents.
I am a person who wholly knows what it’s like to feel hopeless and want more than anything in life for his to end. In Section 10) Depression, Antidepressants and Counseling, I share some of my experiences with depression. Having experienced what I have with depression and suicidal thoughts, I feel I can offer some insights for anyone who may be contemplating taking their life; and for those who are concerned that their loved one may be close to doing so.
This illness causes the afflicted to experience so much. Sometimes we feel like we are going to drown in anger and frustration. With all the missed school; lost social time; absent relationships; and chronic pain...sometimes we feel as though we can’t allow ourselves to get close to others. Other times we feel like people don’t want to get close to us. Sometimes the physical pain seems unending and too intense to endure. At times it’s impossible to imagine how things could ever get better. The things we emotionally and physically cope with cause the waters of our soul to run deep, and much is swimming beneath the surface.
The words we speak are often a reflection of the frustration we feel. Frequently, those frustrated words can be perceived by others as dark. I know I’m guilty of that on occasion. A person may ask, “Is there anything I can do?”
Jokingly I have said, “Do you have a gun?”
Not many people understand or appreciate the darker tinges of my humor that can eek out. Frustrated and tired, it’s easy to say such things. It doesn’t mean we are going to act on them; it doesn’t mean we are suicidal; it doesn’t mean we need a padded cell. It may simply mean we’re tired.
So, if the occasional random expressions of a desire for death are not warning signs, what are?
• Frequently talking about dying or taking their own life;
• Expressing feelings of hopelessness;
• Reckless behavior;
• Withdrawing from others;
• Sleeping too little or too much;
• Extreme mood swings;
• A preoccupation with death.
This is a short list. There are many additional warning signs. By no means am I medical professional. A doctor or psychologist will be able to offer additional and more detailed information than I.
Personally, I experienced each one of those warning signs at some point during my struggles with depression. Though I may have experienced several at a time, I don’t believe I experienced all of them at once. So, what should you do if your child or loved one begins exhibiting a multitude of warning signs?
First, learn to distinguish the difference between an expression of momentary frustration and a true state of depression. If you can’t tell the difference, seek advice from medical professionals. Try to encourage your loved one to talk to someone about what they are feeling.
For me, talking to my parents wouldn’t have made any difference. Don’t misunderstand, I have a WONDERFUL family and incredible parents. Too often, however, children discount parental wisdom or insight. I know I did with many things. What finally allowed me to see that I needed help were several conversations with a trusted friend.
This friend was a leader in my church, but more significantly, he lived with diabetes. To a great extent, he understood what it was that I felt. In time, he helped me see: 1) there was no shame in admitting that I needed help; and 2) embrace the possibility that Sickle Cell could effect my mind just as much as my body (please click here for greater details). My point in sharing this is, sometimes parents aren’t the best source for help (mostly because we kids don't want to listen). Sometimes it’s friends, doctors, psychologists, teachers, or church leaders who have the words that carry more weight.
Suicide in young adults is a problem in our country. 4,600 people from ages 10-24 take their own life each year. 157,000 are annually treated for self-inflicted wounds. Parents and loved ones need to be aware of what is going on in the life of those they love and how those things are emotionally impacting their children.
I write this to parents not to frighten you, but to help you understand what may be taking place in your child's mind. I hid, or at least tried to hide, much of my depression from parents. I didn't want them to worry. Perhaps I was afraid of what they might think.
In the post "Family Openness" I talked about how important it is for families to not be afraid to speak openly about life and death and everything in between. For me, thoughts about death and dying have always been present, even at a very young age. It's important to speak with your child about these things and find out what's going on inside them.
I hope this post provided some useful insight for parents.
Suicide & Sickle Cell -- To Fellow Patients
A few months back, I read on the Sickle Cell Warrior facebook page of
someone with our illness who took their own life. That tragedy has
remained with me. I could have been a Sickle Cell patient who took his
own life. I know what it’s like to feel
helpless, hopeless, and tired of the pain; tired of the
struggle; and emotionally tired in every conceivable way.
Though you may not believe in yourself, God does. He believes you posses the strength to endure the trials of life. And so do I. You posses the courage, faith, will, and strength to survive all that may come your way. Find these things within yourself. I assure you they are there, and much more.
It is natural to become discouraged sometimes. Everybody, healthy or sick, gets depressed. Living with a chronic illness, you and I have a better reason than most to allow feelings of hopelessness to enter our hearts. But just because we can allow something into our hearts, doesn’t mean we should.
Free will is the singular most important gift God has given us. We all have a choice in who we allow ourselves to become and how we choose to live our life. I encourage you to choose to embrace joy. Choose to face your challenges with a smile. Choose to allow God to give you the strength you need to endure the pains of life. Choose to believe your life is worth living. And yes, life is worth living.
When I look at the years I struggled with depression, much of it was of my own doing. It came as a result of the perspective I chose to have in life. Much of my depression, I believe, was also chemical. There is no doubt that antidepressants helped correct whatever brain chemistry that was out of balance. But in addition to the antidepressants, I also changed how I thought about things. I made the choice to be happy. In doing so, I became happy.
Like I said in Section 10, antidepressants are not a cure all that will magically turn that frown upside down. They are an aid. They help. But we must also do our part to make them work. We must have the right mindset, we must eat right, and do our part to care of our mental, physical, emotional and spiritual health (I talk about those four things in Section 09). If we do our part and don’t rely entirely on the medication, we are going to be much better off.
My point isn’t to sell you on antidepressants; that may not be what you need. Only a doctor can determine that. I just know for me, there were times in my life when they helped. Presently I don’t use them.
When I learned that my heart wasn’t strong enough for the double hip replacement surgeries that I need, I was exceptionally depressed. I wondered how life was going to get better. In time, I came out of that fog of depression. My life may not be as it once was, but I do believe things will get better. I hope, whatever your situation is in life, that you carrier that same belief within yourself.
If you are thinking about taking your life, I beg you...please...do not do it! Talk with friends; talk with family; talk with God; talk with your doctor; talk to somebody. Get some help. You are too precious. Though you may not know what it is, you have a work to do in this life. You have touched people around you and there are many more lives that can become better because of you. You can make a difference in this world.
I once thought I had to live my life struggling with suicidal thoughts. I was wrong. If you are experiencing troubling thoughts like I once did, trust me when I say, you don’t have to endure them; there are people who can help. Allow them to help you.
As Sickle Cell patients we endure more pain and trials than most. In spite of those trials, there is joy and be had in life. I truly believe the joys in life can far out weigh the pain, if that’s the choice we make. I know what it’s like to not believe that. I’ve been on both sides of the fence. Joy is a far sweeter aroma than misery.
I encourage you to seek out the authentic joys life has to offer and embrace them fully. Get help. Choose life and be happy.
Though you may not believe in yourself, God does. He believes you posses the strength to endure the trials of life. And so do I. You posses the courage, faith, will, and strength to survive all that may come your way. Find these things within yourself. I assure you they are there, and much more.
It is natural to become discouraged sometimes. Everybody, healthy or sick, gets depressed. Living with a chronic illness, you and I have a better reason than most to allow feelings of hopelessness to enter our hearts. But just because we can allow something into our hearts, doesn’t mean we should.
Free will is the singular most important gift God has given us. We all have a choice in who we allow ourselves to become and how we choose to live our life. I encourage you to choose to embrace joy. Choose to face your challenges with a smile. Choose to allow God to give you the strength you need to endure the pains of life. Choose to believe your life is worth living. And yes, life is worth living.
When I look at the years I struggled with depression, much of it was of my own doing. It came as a result of the perspective I chose to have in life. Much of my depression, I believe, was also chemical. There is no doubt that antidepressants helped correct whatever brain chemistry that was out of balance. But in addition to the antidepressants, I also changed how I thought about things. I made the choice to be happy. In doing so, I became happy.
Like I said in Section 10, antidepressants are not a cure all that will magically turn that frown upside down. They are an aid. They help. But we must also do our part to make them work. We must have the right mindset, we must eat right, and do our part to care of our mental, physical, emotional and spiritual health (I talk about those four things in Section 09). If we do our part and don’t rely entirely on the medication, we are going to be much better off.
My point isn’t to sell you on antidepressants; that may not be what you need. Only a doctor can determine that. I just know for me, there were times in my life when they helped. Presently I don’t use them.
When I learned that my heart wasn’t strong enough for the double hip replacement surgeries that I need, I was exceptionally depressed. I wondered how life was going to get better. In time, I came out of that fog of depression. My life may not be as it once was, but I do believe things will get better. I hope, whatever your situation is in life, that you carrier that same belief within yourself.
If you are thinking about taking your life, I beg you...please...do not do it! Talk with friends; talk with family; talk with God; talk with your doctor; talk to somebody. Get some help. You are too precious. Though you may not know what it is, you have a work to do in this life. You have touched people around you and there are many more lives that can become better because of you. You can make a difference in this world.
I once thought I had to live my life struggling with suicidal thoughts. I was wrong. If you are experiencing troubling thoughts like I once did, trust me when I say, you don’t have to endure them; there are people who can help. Allow them to help you.
As Sickle Cell patients we endure more pain and trials than most. In spite of those trials, there is joy and be had in life. I truly believe the joys in life can far out weigh the pain, if that’s the choice we make. I know what it’s like to not believe that. I’ve been on both sides of the fence. Joy is a far sweeter aroma than misery.
I encourage you to seek out the authentic joys life has to offer and embrace them fully. Get help. Choose life and be happy.
Friday, November 15, 2013
Don't Panic During a Sickle Cell Pain Crisis
Not long ago I was telling a friend that I once had a pain crisis that lasted over a year; it was a constant, mild pain that was present all day every day. She asked me, “Do you ever become panicky and feel as though the pain is never going to end?”
My reply was, “No. I don’t allow myself to become panicky. I learned as a boy that panic only makes the pain worse.”
“But a year of pain,” she exclaimed. “Surly you felt like it would never end?”
“It has to end some time,” I said. “It can’t go on forever.”
¶ In section 06) Controlling Your Pain (see the post titled: Preparation – Be Calm and Breathe Normally) I spoke about how important it is to control your breathing and remain calm during a pain crisis. Like all SC patients who endure long periods of chronic pain, I know how easy it can be to feel: overwhelmed by the pain; a maddening frustration over its prolonged presence; emotionally and physically drained from combating it; and exceptionally irritable.
As patients living with this illness, I don’t think we are always aware of the emotional toll our pain takes on us and often times, those around us. When I was a kid my family found this button-pin that read “leave me alone, I’m having a CRISIS!” I thought it was funny. It wasn’t until I was an adult that I realized that I really was less patient and more irritable during pain crises.
How we physically feel is very closely tied to how we emotionally behave. I mean honestly, who isn’t Mr. or Ms. Crabbypants when their finger is stuck in a door jam? Pain and laughter don’t usually hold hands and go skipping through a field of daisies together.
I think what I’m getting at—and please forgive my rambling—is this:
• Panicking over your pain will only make your pain worse.
• Learn to recognize that you may be a bit crabby when in crisis.
• While a certain level of irritability when in crisis is to be expected, try to use restraint. Just because you are in pain doesn’t mean everybody around you also has to also suffer.
Like so many patients, I know what it’s like to feel overwhelmed from the pain and complications of our illness. But we don’t have the luxury of giving into those feelings. Bottling in that stress will only worsen your health. Talk with friends and family about how your feel; find healthy ways to vent your frustrations (i.e. art, music, writing, etc.); perhaps talk with a counselor; treat yourself to something now and then; redirect that energy into positive things.
Though sometimes it feels as though you no longer posses the strength to endure the trials your health throws at you, I assure you that you do. “With man this is impossible, but with God, all things are possible.”
My reply was, “No. I don’t allow myself to become panicky. I learned as a boy that panic only makes the pain worse.”
“But a year of pain,” she exclaimed. “Surly you felt like it would never end?”
“It has to end some time,” I said. “It can’t go on forever.”
¶ In section 06) Controlling Your Pain (see the post titled: Preparation – Be Calm and Breathe Normally) I spoke about how important it is to control your breathing and remain calm during a pain crisis. Like all SC patients who endure long periods of chronic pain, I know how easy it can be to feel: overwhelmed by the pain; a maddening frustration over its prolonged presence; emotionally and physically drained from combating it; and exceptionally irritable.
As patients living with this illness, I don’t think we are always aware of the emotional toll our pain takes on us and often times, those around us. When I was a kid my family found this button-pin that read “leave me alone, I’m having a CRISIS!” I thought it was funny. It wasn’t until I was an adult that I realized that I really was less patient and more irritable during pain crises.
How we physically feel is very closely tied to how we emotionally behave. I mean honestly, who isn’t Mr. or Ms. Crabbypants when their finger is stuck in a door jam? Pain and laughter don’t usually hold hands and go skipping through a field of daisies together.
I think what I’m getting at—and please forgive my rambling—is this:
• Panicking over your pain will only make your pain worse.
• Learn to recognize that you may be a bit crabby when in crisis.
• While a certain level of irritability when in crisis is to be expected, try to use restraint. Just because you are in pain doesn’t mean everybody around you also has to also suffer.
Like so many patients, I know what it’s like to feel overwhelmed from the pain and complications of our illness. But we don’t have the luxury of giving into those feelings. Bottling in that stress will only worsen your health. Talk with friends and family about how your feel; find healthy ways to vent your frustrations (i.e. art, music, writing, etc.); perhaps talk with a counselor; treat yourself to something now and then; redirect that energy into positive things.
Though sometimes it feels as though you no longer posses the strength to endure the trials your health throws at you, I assure you that you do. “With man this is impossible, but with God, all things are possible.”
Friday, November 8, 2013
Sickle Cell Disease: Faith vs Fear
In the words of Yoda the Wise, “Fear is the path to the Dark Side.” So why am I quoting Yoda? One, he’s my favorite Star Wars character; two, fear is the topic for the week.
On the Sickle Cell Warriors facebook page, I’ve read several posts about how fearful this or that person is about many of the complications that could arise in their future. They live in constant worry that Avascular Necrosis will become an issue; they fear the next pain crisis; or feel anxiety about another hospital visit, to name a few. If you are presently experiencing this, please, do not take my words as a criticism. In no way am I criticizing your feelings. I just want to address this issue.
It’s human nature to fear the unknown, and with Sickle Cell there are many unknowns. I think knowledge is the first tool that can be used to quiet the fear within. If you are worried about needing a hip replacement surgery sometime in your future, the best thing you can do is learn all about Avascular Necrosis, what causes it, and what you can do to prolong its affects. Talk with your doctor, ask if there are procedures or medications that can help improve circulation to the hips and shoulders.
Until I was told I needed both hips replaced, I was fairly ignorant of the fact that hip replacement surgery is common for Sickle Cell patients. There are a great many things I wish I knew five years ago; perhaps it could have made a difference in where I am now in regards to my hips. Perhaps it wouldn’t have made any difference, but I wish I had educated myself better.
Yes, there are certain realities to our illness. But just because Sickle Cell throws this or that complication at me, it doesn’t mean you will experience the same thing; Sickle Cell affects each of us in different ways. Changes in diet, sleep, stress levels, physical activity, and medications each can have a powerful impact upon our health. Sometimes a small change can produce great results.
¶ Living with constant fear in your heart can be emotionally crippling. It will add unnecessary stress to your life and will negatively impact your health. Talking with other Sickle Cell patients can of comfort. If you are like I am and don’t personally know anybody who has your illness, there are other sources available like: facebook pages, support groups, online forums, and other Sickle Cell organizations. Talk with other patients and find out how they cope with the unknowns of their illness. It may empower you. I understand there is a pretty informative blog out there.
¶ I have always been taught that fear and faith cannot exist in the mind and heart at the same time. You either have fear or you have faith; you can’t feel both simultaneously. Having faith (obviously in God) is sometimes a complicated thing. Personally, I’ve never worried too much about what complications could arise in my life; instead I’ve had faith that God would: 1) empower me with the emotional and spiritual strength to endure them; and 2) grant my body the physical strength to either cope with or over come them.
I recall my mother once said, “Jon just takes everything in stride. He really doesn’t let things bother him.” To a large degree this is true. I’ve always been of the mind, “What will be will be, and I’ll face what ever comes if and when it does.” That doesn’t mean I’m reckless in how I live my life, it just means I didn’t worry about things. I learned a long time ago that anxiety, like jumping into a cold swimming pool, only negatively impacts my health.
Beyond the what I’ve already said, and without getting preachy on you about God and faith, I can’t offer any additional advice on how to overcome the fear you my feel about your illness. I only know that God will get you through your next complication just as He has all previous ones. I know this because that’s what He has done for me.
The only control in life we have is self-control. There are a number of ways to manage your health through knowledge and self-control; everything else is in the Master’s hands. Have faith my friends that with God’s empowerment, you possess the strength to endure all that comes your way. Have faith that no matter what comes your way, you will be a better person for it. Have faith that God watches over and loves you. Have faith, not fear.
On the Sickle Cell Warriors facebook page, I’ve read several posts about how fearful this or that person is about many of the complications that could arise in their future. They live in constant worry that Avascular Necrosis will become an issue; they fear the next pain crisis; or feel anxiety about another hospital visit, to name a few. If you are presently experiencing this, please, do not take my words as a criticism. In no way am I criticizing your feelings. I just want to address this issue.
It’s human nature to fear the unknown, and with Sickle Cell there are many unknowns. I think knowledge is the first tool that can be used to quiet the fear within. If you are worried about needing a hip replacement surgery sometime in your future, the best thing you can do is learn all about Avascular Necrosis, what causes it, and what you can do to prolong its affects. Talk with your doctor, ask if there are procedures or medications that can help improve circulation to the hips and shoulders.
Until I was told I needed both hips replaced, I was fairly ignorant of the fact that hip replacement surgery is common for Sickle Cell patients. There are a great many things I wish I knew five years ago; perhaps it could have made a difference in where I am now in regards to my hips. Perhaps it wouldn’t have made any difference, but I wish I had educated myself better.
Yes, there are certain realities to our illness. But just because Sickle Cell throws this or that complication at me, it doesn’t mean you will experience the same thing; Sickle Cell affects each of us in different ways. Changes in diet, sleep, stress levels, physical activity, and medications each can have a powerful impact upon our health. Sometimes a small change can produce great results.
¶ Living with constant fear in your heart can be emotionally crippling. It will add unnecessary stress to your life and will negatively impact your health. Talking with other Sickle Cell patients can of comfort. If you are like I am and don’t personally know anybody who has your illness, there are other sources available like: facebook pages, support groups, online forums, and other Sickle Cell organizations. Talk with other patients and find out how they cope with the unknowns of their illness. It may empower you. I understand there is a pretty informative blog out there.
¶ I have always been taught that fear and faith cannot exist in the mind and heart at the same time. You either have fear or you have faith; you can’t feel both simultaneously. Having faith (obviously in God) is sometimes a complicated thing. Personally, I’ve never worried too much about what complications could arise in my life; instead I’ve had faith that God would: 1) empower me with the emotional and spiritual strength to endure them; and 2) grant my body the physical strength to either cope with or over come them.
I recall my mother once said, “Jon just takes everything in stride. He really doesn’t let things bother him.” To a large degree this is true. I’ve always been of the mind, “What will be will be, and I’ll face what ever comes if and when it does.” That doesn’t mean I’m reckless in how I live my life, it just means I didn’t worry about things. I learned a long time ago that anxiety, like jumping into a cold swimming pool, only negatively impacts my health.
Beyond the what I’ve already said, and without getting preachy on you about God and faith, I can’t offer any additional advice on how to overcome the fear you my feel about your illness. I only know that God will get you through your next complication just as He has all previous ones. I know this because that’s what He has done for me.
The only control in life we have is self-control. There are a number of ways to manage your health through knowledge and self-control; everything else is in the Master’s hands. Have faith my friends that with God’s empowerment, you possess the strength to endure all that comes your way. Have faith that no matter what comes your way, you will be a better person for it. Have faith that God watches over and loves you. Have faith, not fear.
Friday, November 1, 2013
Angry with God About Sickle Cell?
A friend of mine recently asked me, "Don't you ever feel angry at God for all the things you have to endure?" My answer was, "No." Though this friend and I are of the same faith, this amazed her. For me personally, getting angry with God has never made any sense.
Just as we will return to live with God after this life is over, I believe that we all lived with God as His spirit children before we came to live on earth as mortal beings. I also believe, when we lived with Him as spirits, that we each chose to be born on earth; that we understood the challenges we would face while on earth; and we chose to accept those challenges.
I feel these beliefs are the reasons why I have made the choice to never be angry with God. Yes, there have been times when I wondered why this is happening, times when I've felt lost and confused, but never angry at Father. I believe I chose this life and accepted the trials and blessings that came with it; how could I possibly be angry with God for that?
Whether or not a person is of my faith, I know not everyone has this same outlook. It can be an easy temptation to exclaim to the heavens with clinched fists, "Why are You doing this to me?" As hard as it is, we should train ourselves to instead ask, "What is it that You want me to learn from this?" Or, "How can I be a better person from having had this experience?"
One of my favorite Bible stories is found in John 9:1-3. It reads: "And as Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."
There are many reasons I like these verses. One reason is that it can be a source of relief to parents. Sometimes parents feel a terrible guilt over their child's disability. This verse tells me that--unless it was through gross negligence, such as drug or alcohol abuse--a parent’s sins or actions did not cause their child to be born with a disability; as sad as it is, some people believe this. They are idiots; don’t listen to them.
The other reason I like these verses is found in the last verse: "...but that the works of God should be made manifest in him." We can't see God's purpose in all things. But one thing I am certain of, you and I were born on this earth for a reason. Sometimes, quite often in fact, the trials that you and I endure from having Sickle Cell Disease is a source of inspiration to other people.
I don't say this boast, but rather to acknowledge God's purpose. I know for certain that my life has touched others. The things I endure, how I endure it, and the way I've chosen to live my life has been an inspiration to many people. I think this is what the last part of that verse means. Your life can motivate people to do and be better.
I have survived many things that should have killed me and have been healed from many afflictions. The miracles in my life, and yours as well, are a manifestation of God's love and power. Though it may not bring much comfort when we are having a horrid pain crisis, the truth still remains that others see our strength and are made better by it.
Living with Sickle Cell Anemia, you and I will face a great number of trials. These are not punishments from our loving Heavenly Father, but are opportunities for us, and others, to emotionally and spiritually grow closer to Him. Yes, pain will come. Yes, complications will arise. But it's how you and I choose to weather these storms that will define who we are as a son or daughter of God. They will also help inspire others.
Don’t allow the pain in your life to put a wedge between you and God. Instead, allow that pain to be an instrument to build an unbreakable bond with your Creator. It will enrich your life, and the lives of others, beyond what words can convey.
Just as we will return to live with God after this life is over, I believe that we all lived with God as His spirit children before we came to live on earth as mortal beings. I also believe, when we lived with Him as spirits, that we each chose to be born on earth; that we understood the challenges we would face while on earth; and we chose to accept those challenges.
I feel these beliefs are the reasons why I have made the choice to never be angry with God. Yes, there have been times when I wondered why this is happening, times when I've felt lost and confused, but never angry at Father. I believe I chose this life and accepted the trials and blessings that came with it; how could I possibly be angry with God for that?
Whether or not a person is of my faith, I know not everyone has this same outlook. It can be an easy temptation to exclaim to the heavens with clinched fists, "Why are You doing this to me?" As hard as it is, we should train ourselves to instead ask, "What is it that You want me to learn from this?" Or, "How can I be a better person from having had this experience?"
One of my favorite Bible stories is found in John 9:1-3. It reads: "And as Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."
There are many reasons I like these verses. One reason is that it can be a source of relief to parents. Sometimes parents feel a terrible guilt over their child's disability. This verse tells me that--unless it was through gross negligence, such as drug or alcohol abuse--a parent’s sins or actions did not cause their child to be born with a disability; as sad as it is, some people believe this. They are idiots; don’t listen to them.
The other reason I like these verses is found in the last verse: "...but that the works of God should be made manifest in him." We can't see God's purpose in all things. But one thing I am certain of, you and I were born on this earth for a reason. Sometimes, quite often in fact, the trials that you and I endure from having Sickle Cell Disease is a source of inspiration to other people.
I don't say this boast, but rather to acknowledge God's purpose. I know for certain that my life has touched others. The things I endure, how I endure it, and the way I've chosen to live my life has been an inspiration to many people. I think this is what the last part of that verse means. Your life can motivate people to do and be better.
I have survived many things that should have killed me and have been healed from many afflictions. The miracles in my life, and yours as well, are a manifestation of God's love and power. Though it may not bring much comfort when we are having a horrid pain crisis, the truth still remains that others see our strength and are made better by it.
Living with Sickle Cell Anemia, you and I will face a great number of trials. These are not punishments from our loving Heavenly Father, but are opportunities for us, and others, to emotionally and spiritually grow closer to Him. Yes, pain will come. Yes, complications will arise. But it's how you and I choose to weather these storms that will define who we are as a son or daughter of God. They will also help inspire others.
Don’t allow the pain in your life to put a wedge between you and God. Instead, allow that pain to be an instrument to build an unbreakable bond with your Creator. It will enrich your life, and the lives of others, beyond what words can convey.
Subscribe to:
Posts (Atom)